Finding your voice when you don't feel heard

Have you ever walked out of an appointment thinking, “That’s not what I meant,” or “They didn’t really understand how hard this is for me”? Feeling unheard is a common experience, and we are here to help you find your voice when you don’t feel heard in the health system.

Living with arthritis or another long-term condition often means having repeated conversations about pain, fatigue, mobility, medications, and daily challenges. Over time, it can become exhausting to explain yourself, especially if you feel your concerns are minimised or misunderstood.

If this has happened to you, you’re not alone. And there are things you can do to feel heard. 

You are the expert in your own body and daily life. Health professionals bring clinical knowledge, but you bring lived experience. The best outcomes happen when those two forms of expertise work together.

Self-advocacy isn’t about being difficult or demanding. It’s about being informed, prepared, and confident enough to participate in decisions that affect your wellbeing.

And your voice doesn’t just matter in the clinic, it matters at a systems level too.

At Arthritis NZ, the stories we hear through Arthritis Assist help us advocate for change. They shape the conversations we have with decision-makers about access to support, funding, medication, home help, and the everyday realities of living with arthritis in New Zealand.

As we move into an election year, lived experience stories are more important than ever. Politicians need to hear directly how policies affect real people, not just statistics.

Here are some steps to make sure you find your voice and feel heard. 

One of the most powerful advocacy tools is preparation.

Before your appointment, take a few minutes to write down:

• your top two or three concerns
• how your symptoms are affecting daily life
• any specific questions you want answered

Try to use real-life examples. Instead of saying, “my arthritis is bad,” you might say, “my hand pain means I can’t hang washing or vacuum without severe pain later.” Clear examples help others understand the impact on your independence and safety.

If appointments feel overwhelming, consider taking a support person. A friend, partner, or whānau member can listen, take notes, and help you feel more confident speaking up. 

It’s okay to slow things down. You can say:

• “Can you explain that in a different way?”
• “What are my options?”
• “What happens if I don’t choose this treatment?”
• “I don’t feel my pain is being fully understood.”
• You have the right to ask questions and to understand your choices.

If you disagree or feel uncertain, you can respectfully say so. Shared decision-making works best when it’s genuinely shared. 

Sometimes, despite your best efforts, you may still feel dismissed. If that happens, you have options.

You can:

• ask for a reassessment or review
• request a second opinion
• ask to see a different clinician
• seek independent advocacy support 

While we don’t provide individual advocacy representation, our Arthritis Assist team can help you prepare, understand your options, and — where appropriate — provide letters of support based on your history with us. 

We can also amplify your story. 

When people feel ready to share their experiences (anonymously if preferred), those stories help us speak with strength and credibility when we meet with Ministers, MPs, and health leaders. They help ensure arthritis remains visible in policy conversations. 

If you’ve experienced barriers to care, challenges accessing support, or simply want decision-makers to understand what daily life is really like, we would love to hear from you. 

In Aotearoa New Zealand, free and independent support is available through:

Health and Disability Advocacy Service 
Ph 0800 555 050 

Living with a long-term condition takes resilience. Speaking up can feel uncomfortable, especially if you’re tired, in pain, or worried about being seen as “difficult.”

But your experience matters. In appointments. In services. And in the wider health system.

This election year, your story could help shape change.

If you’re unsure where to begin, reach out. Sometimes the first step in advocacy is simply having someone listen.